Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

REPLY
@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

Jump to this post

Recently diagnosed with sjogrens after 7 years almost. Started out with abdominal pain then dry eyes, dry mouth, sores in mouth that might be related to my lichen planus , joint pain all over, ear ache,.not sure if ear has any relationship. Recently a dr prescribed plaquenel will be on that soon.

REPLY

CMTG – there are many members here on Connect who are on or have been prescribed plaquenil. Simply put “plaquenil” in the search bar and you’ll find them all. There are at least 2 threads about it too.

– Mycophenolate mofetil with Plaquenil http://mayocl.in/2avQVdd
– Plaquenil eye problems http://mayocl.in/2bsC7M0

REPLY

Sorry to hear that.
Sjogren’s is a big topic.
How were you diagnosed, as in what were the criteria, positive ANA, positive anti-Ro, salivary gland biopsy etc?
What treatment(s) have you been given, if any?
Do you have any commonly co-occurring autoimmune illnesses such as Hashimoto’s Thyroiditis?

Overview might be of help:
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Thanks

REPLY
@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

Jump to this post

Plaquenil is usually a pretty safe drug to take but if you notice any major changes, report them.
Sjogren’s has been known to cause ear issues. Its a systemic illness so it could technically cause or exacerbate a lot of things.

There are more details around but here’s a high level overview.
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Hope this helps.

REPLY
@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

Jump to this post

I was diagnosed with a salivary gland lip biopsy about 10 years ago. I take cervimeline for my sjogren’s. Also use biotene toothpaste, mouth wash and mouth spray. Keep water with me constantly. I also have RA. Was on plaquenil for a long time and it helped, but then it started affecting my eye sight. Be sure to have an eye exam to look for damage every six months if you take the plaquenil. I no longer take it. But it is rare to have the eye sight side affect. Praying all goes well with you.

REPLY
@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

Jump to this post

I’ve had nausea this week wondering if this is from sjogrens or Tylenol I take for my ear ache.

REPLY

Positive ANA, did not have the gland biopsy. Plaquenel prescribed have not taken yet. I have the dry mouth, dry eyes which are typical and lately nausea.

REPLY
@cmtg

Positive ANA, did not have the gland biopsy. Plaquenel prescribed have not taken yet. I have the dry mouth, dry eyes which are typical and lately nausea.

Jump to this post

Hi, and welcome.
So you did not have positive anti-SSA or anti-SSB and were diagnosed based on a positive ANA and subjective dryness? Here are the current diagnostic criteria:

According to the American-European classification system (as modified by Tzioufas and Voulgarelis[5] ), diagnosis of primary Sjögren syndrome requires at least four of the criteria listed below; in addition, either criterion number 5 or criterion number 6 must be included. Sjögren syndrome can be diagnosed in patients who have no sicca symptoms if three of the four objective criteria are fulfilled. The criteria are as follows:

Ocular symptoms – Dry eyes for more than 3 months, foreign-body sensation, use of tear substitutes more than 3 times daily
Oral symptoms – Feeling of dry mouth, recurrently swollen salivary glands, frequent use of liquids to aid swallowing
Ocular signs – Schirmer test performed without anesthesia (< 5 mm in 5 min), positive vital dye staining results Oral signs - Abnormal salivary scintigraphy findings, abnormal parotid sialography findings, abnormal sialometry findings (unstimulated salivary flow < 1.5 mL in 15 min) Positive minor salivary gland biopsy findings Positive anti–SSA or anti–SSB antibody results from http://emedicine.medscape.com/article/332125-overview

Little surprising that they would start you on plaquenil without all of the diagnostic criteria being met so wondering what they must have seen. Not saying they’re wrong, just as I said, surprised. I have it and my lip biopsy was negative so I had to meet other criteria, one of which was a high titer anti-SSA along with some IGG abnormalities which I don’t understand well enough the try and explain. There can be a lot of reasons for a positive ANA.

Never heard of a strong association between nausea and Sjogren’s but GI symptoms aren’t unusual.

Any thyroid disease? Common comorbidity with Sjogren’s.

The good news is that plaquenil is the right stuff and that its usually easy to tolerate.

REPLY

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

REPLY
@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

Jump to this post

Ok. If you’re satisfied with it, and it covers your complaints, sure.
Do you have a question about Sjogren’s?

REPLY
@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did’t make myself clear to you.

Jump to this post

Does anyone have earaches from Sjogrens?

REPLY
Please sign in or register to post a reply.